Medical School, Swansea University, Singleton Park, Swansea, SA2 8PP, UK.
Centre for Innovative Ageing, College of Human and Health Science, Swansea University, Swansea, UK.
BMC Med Res Methodol. 2019 Feb 15;19(1):34. doi: 10.1186/s12874-019-0671-6.
Public and patient involvement is a routine element of health services research methods to produce better designed and reported studies. Although co-production is recommended when involving people in research, methods for involving people are usually designed and managed by researchers and there is little evidence about methods to co-produce models for effective public and patient involvement. We report the method used by a group of patient and carer service users to develop and implement a model for involving public members in research.
We recruited people with experience of chronic conditions, as patients and carers, and supported them to develop and implement the involvement model. We collected written records to describe the processes of co-production.
Sixteen service users were involved through a series of workshop, meeting and email discussions. They specified principles and operating characteristics of the model which concerned an inclusive culture, adequate resources, accessibility, good communication and clarity of purpose and roles. Components of the model included an on-line Panel of members (n = 20), Steering Group meetings, representation and communication system, facilitator, supportive research environment and access to research activities. Over 8 years, members were active in 218 research activities and held 22 Steering Group meetings. The model was named SUCCESS standing for Service Users with Chronic Conditions Encouraging Sensible Solutions.
We supported patients and carers to co-produce the SUCCESS model of involvement in research. The model's components, addressing their needs and priorities, led to sustained involvement in research over 8 years. Further work is needed to apply the model in different settings and assess impact of this method of involving people in research.
公众和患者参与是卫生服务研究方法的常规要素，旨在产生设计和报告更好的研究。尽管在涉及人员参与研究时推荐共同生产，但参与人员的方法通常由研究人员设计和管理，并且几乎没有关于共同生产有效公众和患者参与模型的方法的证据。我们报告了一组患者和护理服务使用者用于开发和实施参与公众成员研究模型的方法。
我们招募了有慢性疾病经验的人，作为患者和护理人员，并支持他们开发和实施参与模型。我们收集书面记录来描述共同生产的过程。
通过一系列研讨会、会议和电子邮件讨论，有 16 名服务使用者参与其中。他们指定了模型的原则和操作特点，这些特点涉及包容文化、充足资源、可及性、良好沟通和明确的目的和角色。该模型的组成部分包括在线成员小组（n=20）、指导小组会议、代表和沟通系统、促进者、支持性研究环境以及参与研究活动的机会。8 年来，成员积极参与了 218 项研究活动，并举行了 22 次指导小组会议。该模型被命名为 SUCCESS，代表慢性疾病患者鼓励明智解决方案的服务使用者。
我们支持患者和护理人员共同生产参与研究的 SUCCESS 模型。该模型的组成部分满足了他们的需求和优先事项，导致在 8 年多的时间里持续参与研究。需要进一步的工作来将该模型应用于不同的环境，并评估这种参与人员参与研究的方法的影响。
